One of Scottish Autism's recent tweets linked to the story of Viginia Bovell, the ex-wife of author Nick Hornby. In this article,she Writes about their autistic son and the frightening possibility that he may be alive for up to forty years after they have both died. I guess this is a reflection of the fears many of us with profoundly autistic children and young adults have. Just who is going the care for them once we are gone. Because sadly, its a burden too much for many siblings left to carry on with the caring. The recent Panorama television expose of care home abuse just compounds the problem for many, giving rise to an additional worry of what might be happening to their child or other relative placed in any kind of care establishment. Add this to the guilt feelings which often arise from making such placement decisions and you have a potent cocktail of fear and anxiety. This is what Virginia is alluding to when she writes..
Too much attention has been paid to discovering the cause of autism and not enough to making sure that those who have it can lead happy, fulfilled lives within society.
This is why its heartening to know that the emphasis of service providers such as Scottish Autism is on just this issue - services, help and advice focussed firmly on quality of life for people with autistic spectrum disorders and their families. A focus perhaps reflected in the Scottish Autism 'mission statement' which can be seen on this blog's header and on the SA website...
Enabling people living with autism in Scotland through the whole life journey
I suppose one solution to this problem, faced by Virginia and so many others up and down the country is some degree of forward planing, although in a rapidly changing society with ever-present funding issues this can be difficult. Good advice is essential now, more than ever before.
Family carers, like Virginia, myself, and thousands of others, save this country untold millions of pounds in care costs. Many of us have given up our jobs and careers to look after our children and other family members affected by disabilities and conditions like autism. Is it really asking too much that some of this saved money be spent on improving the quality of life and securing the futures of all those affected?
Scottish Autism runs an advice helpline. Go to their website for further details of this and their other services. And have a look at this video which shows how things can be, with a little imagination, committment, and lots of effort :-)